Down Syndrome Q&A

Since October is Down Syndrome Awareness Month--I'll be spending a little more time on Ds than I usually do.  (Ha!  Some of you probably think that's the ONLY thing I talk about anyway!  Be prepared for more!)

These are some questions people have actually asked me about Down syndrome--and experience tells me me that if one person actually ASKS the question, then other people are probably thinking the same thing, they just don't speak up.

A lot of these questions can be found on the National Down Syndrome Society's (NDSS) website, but I've added in some of my own thoughts as well.

What causes Down syndrome?

From NDSS:Down syndrome is usually caused by an error in cell division called "nondisjunction." Nondisjunction results in an embryo with three copies of chromosome 21 instead of the usual two. Prior to or at conception, a pair of 21st chromosomes in either the sperm or the egg fails to separate. As the embryo develops, the extra chromosome is replicated in every cell of the body. This type of Down syndrome, which accounts for 95% of cases, is called Trisomy 21.

This is the type of Down syndrome that Miss B has.  Dr. Genes, our fabulous geneticist that studied the Miss B's chromosomes, referred to it as "your garden variety Trisomy 21".  Ha!

Did you do something when you were pregnant that caused Miss B to have Down syndrome?

No.  According to Dr. Genes, there is nothing that anyone can do to cause or prevent nondisjunction from occurring.  It just happens.

         From NDSS:

The cause of nondisjunction is currently unknown, but research has shown that it increases in frequency as a woman ages. There is no definitive scientific research that indicates that Down syndrome is caused by environmental factors or the parents' activities before or during pregnancy. 

Oh, and for those of you that were taught in school that Down syndrome occurs because the mother did a lot of drugs...I (and I would guess the majority of mothers of kids with Ds that I know) am living proof that that is simply not true.  I have never done any sort of drugs in my life--I've never even had a drink of alcohol and never touched a cigarette for that matter either.  I have to be in some serious pain to even take Tylenol--which is just about the safest drug out there...so if you would please correct your teachers on that one, I would appreciate it.

But you're not old enough to have a child with Down syndrome?!  I thought you were "safe" until you were 35?

Surprise!  Due to higher birth rates in younger women, 80% of children with Down syndrome are born to women under 35 years of age.

And honestly, Miss B is so fabulous that I am grateful that I was not "safe" from having a child with Down syndrome.  We feel like the lucky ones!

Miss B is ALWAYS happy!  But then all people with Down syndrome are like that I guess.

In general, Miss Banana is a pretty content little lady.  She likes to smile, she likes to laugh, and she goes with the flow.

But...you should see here when you get out her favorite food (bananas) and then pretend like you aren't going to share with her.  She can throw a tantrum--complete with yelling and crying--to rival the best of them. 

Or, try to go outside and not take her with you...and then be prepared for her to give you the cold shoulder when you come back in. 

Or watch her older brothers try to play with toys without her...and she will throw some elbows and pull some hair to fight her way in. 

Trust me, she is not ALWAYS happy.  She has a full range of emotions, just like people with 46 chromosomes do.

And compared to the boys, I can already tell she's going to be a bit more of a drama queen then they are...but I think that's due to the fact that she has two X chromosomes...not that she has an extra 21st chromosome!

I am so sorry that you will have to deal with a severely retarded child.

I know people mean well when they say things like this...especially right after we received Miss B's diagnosis...but...PLEASE don't say this to a mom with a brand new child with Down syndrome.  No one knows the full capabilities of ANY child and it kind of stings when people automatically assume that Miss B will never learn and will never be able to participate in society in a meaningful way.

From NDSS:

Most people with Down syndrome have IQs that fall in the mild to moderate range of intellectual disability (formerly known as “retardation”). Children with Down syndrome fully participate in public and private educational programs. Educators and researchers are still discovering the full educational potential of people with Down syndrome.

I know the term "mental retardation" is not the favorable term right now...especially since the word r*tard is used as derogatory slang.  But what should I call Miss B's diagnosis?

While I don't prefer the term "mentally retarded"--mainly because of the negative stigma that the word r*tarded has taken on--when used in the medical sense, I don't cringe as much.  It's not my preference, but it has been used for years, so I don't get all worked up about people using it as part of her diagnosis.  If you use the r-word as slang though, you are making fun of my daughter and I become mama bear.  Just FYI.

Recently though, the federal government changed their wording to refer to people with Down syndrome as having an "intellectual disability".  Or, you could also just simply say she has a "developmental delay."  Either one is perfectly acceptable.

I have heard the term "handi-capable" and I like that one--probably not going to show up on government forms though!

Those are just some of the questions I've gotten in the past few months.  If you have any other questions, please let me know!